Opening the Door for Children with Cerebral Palsy - www.grandviewcc.ca - Disability Awareness Program
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Disability Awareness Program
Proudly Supported by ...
Opening the Door
for Children with
Cerebral Palsy
www.grandviewcc.ca
This work is dedicated to the children
and youth of Grandview Children’s
Centre who show us the way!
Introduction
About Us
When families first find out their child has Cerebral
Grandview Children’s Centre offers programs and
Palsy, they often feel overwhelmed. With information
services for children with special needs, from infancy
scattered in books and on the internet, locating
to adolescent age. To find out more about these
resources to help answer questions can be challenging.
programs and services and what our staff may be
That’s why Grandview Children’s Centre created this
able to do to help you and your child, please visit booklet; to open the door to the world of Cerebral Palsy.
our website at www.grandviewcc.ca Hopefully it answers some of your questions and sparks
more questions for you to ask us. The bolded words can
be found in the glossary at the back of this booklet.
Our Mission
Grandview Children’s Centre works with children
The pictures are of children who attend Grandview
and youth with special needs and their families to
Children’s Centre. They are all learning about
achieve their personal best.
everything they are able to do. The photos say it all -
these are happy children. Included in the booklet are
Our Vision many comments from parents who write about the
impact of having a child with Cerebral Palsy. These
Grandview Children’s Centre... leading the way to
heartfelt words were written for you… read them and
excellence in services for children and youth with
know that you are not alone. Enjoy reading this booklet
special needs and their families.
about the wonderful children of Grandview, and how
together, we can help them achieve their personal best.
2 3
These heartfelt
words were Table of Contents
written for you…
read them and
know that you
are not alone.
6 What is Cerebral Palsy?
Acknowledgements
7 How is Cerebral Palsy Diagnosed?
Wow… who knew that getting ‘Opening the Door for
8 Are there Different Types of Cerebral Palsy?
Children with Cerebral Palsy’ off the ground was going to
be so much work. It has been such a great experience for 10 What Causes Cerebral Palsy?
Allyson and I to work together. She has brought such a 12 How Does Cerebral Palsy Affect my Child’s
thoughtful perspective as she wrote, edited and organized Learning and Daily Activities?
staff participation for this booklet.
14 How Healthy are Children who have Cerebral
Palsy?
It is wonderful to see such an insightful and talented young
woman make such a great contribution, and for those of 16 Can Cerebral Palsy be Treated? How do we
you who are wondering, yes she does have Cerebral Palsy! Manage Cerebral Palsy?
We want to thank Grandview Children’s Foundation for
16 What Types of Therapy will my Child Need?
their help organizing the photography and layout, and for 17 Cerebral Palsy and Botulinum Toxin A (Botox®)
their generous financial support in making this booklet
18 What’s New in Research?
come to life.
20 What Other Programs do
Allyson Partridge Carolyn Hunt you Offer?
Cerebral Palsy Booklet Project Developmental Pediatrician
Coordinator Medical Director, 21 The Doors Open… Now What?
Grandview Children’s Centre
22 Financial Resources Available for Families of
Children with Disabilities
24 Additional Resources
4 26 Glossary 5
What is Cerebral Palsy?
What was it like
How is Cerebral Palsy Diagnosed?
when your child
was first
diagnosed with
Cerebral Palsy?
At first, it was difficult
and hard to accept What is Cerebral Palsy? How is Cerebral Palsy Diagnosed?
that something was
wrong with my son. When you have Cerebral Palsy, the part of the brain that controls Parents are usually the first ones to notice their child has difficulty with motor skills.
Once I came to terms movement doesn’t work well. There are many causes, but the For example, your child may not sit up or walk as quickly as other children. They may
with this, all the help underlying problem is that the signal the brain sends to the do things slightly differently, such as ‘commando crawl’ (crawl right on their belly) or
and support from the muscles doesn’t work properly. Commonly, there is difficulty with walk on their toes. It is also common that your doctor or therapist is the first to notice
Grandview staff made coordination, balance and tight muscles that make it hard to differences in motor function. Signs of Cerebral Palsy are present within the first 24
it an easier road. walk. Most children’s muscles may feel tight or stiff, which is months of life and it is often suspected as early as 6 months. A firm diagnosis does
referred to as spasticity. Some children have only minimal effects not usually take place until 1 - 2 years of age.
We always knew from and can walk, while others use a walker or wheelchair. Most
the day our son was young children with Cerebral Palsy make progress with their Your doctor is the one who diagnoses Cerebral Palsy. They listen to your child’s
born there was a motor skills, but the amount of progress and the amount of time medical and developmental history, especially their motor skills, and review all
problem. We went to it will take, depends on how severely the child is affected. aspects of health and development. A physical examination determines whether there
many different doctors is tightness in the muscles (spasticity) or increased reflexes. Sometimes pictures of
that had many your child’s brain are necessary to confirm a difference in one of the areas that
different opinions. controls motor function and this is called Magnetic Resonance Imaging (MRI). The
So when our son was decision to proceed with MRI can be discussed with your doctor and depends on your
diagnosed, we were child’s symptoms. Putting all this together, along with information about risk factors
relieved that finally and results from tests, allows for a diagnosis of Cerebral Palsy to be made.
there was an answer.
6 7
Are there Different Types of Gross Motor
Cerebral Palsy? Function
& Determining the Level of Motor Function Classification
System Levels
Are there Different Types of Cerebral Palsy? LEVEL 1
Yes. Cerebral Palsy is often classified based on the body part that is Walks without
affected and the type of movement problem that is present. restrictions;
limitations in more
advanced gross
Spastic Cerebral Palsy Extra-pyramidal Cerebral Palsy Level of Motor Function (see sidebar) motor skills.
Spastic Cerebral Palsy is the most common type Extra-pyramidal Cerebral Palsy is less common and At Grandview, we also classify Cerebral Palsy based on how
and means the primary problem is tightness in the accounts for about 10% of all children with your child’s abilities affect their day-to-day life. This is done LEVEL 2
muscles. It involves primarily the legs (spastic Cerebral Palsy. Children with extra-pyramidal using the Gross Motor Function Classification System Walks without
diplegia), one side (spastic hemiplegia), 3 Cerebral Palsy have extra movements, called (GMFCS); a research tool that was developed right here in assistive devices;
limitations walking
affected limbs (triplegia) or the whole body dystonia, or have unsteadiness, called ataxia. Ontario. The GMFCS shows us that children with Cerebral outdoors and in the
(spastic quadriplegia). Some children have a combination of spasticity Palsy have symptoms that cluster in 5 Levels. Children with community.
and extra-pyramidal Cerebral Palsy, which is then Level 1 have mild motor symptoms and are able to walk and
called mixed Cerebral Palsy. Sometimes children’s run. They have differences in speed, quality of movement and LEVEL 3
symptoms don’t fit clearly into one category but the agility. Children with Level 5 have the most severe involvement. Walks with assistive
findings on an imaging study, such as MRI, may They use a wheelchair for mobility and require help with most devices; limitations
walking outdoors and
help clarify the diagnosis. activities of daily living. in the community.
Research shows that parents are very accurate in determining LEVEL 4
Cerebral Palsy the level at which their child is functioning. Talk to your team at Self-mobility with
Cerebral = Of the Brain the Centre about which level your child is at and what limitations; children
Palsy = Lack of Muscle Control are transported or
expectations to have about your child’s future motor skills. Your
use power mobility
doctor or therapy team is usually able to begin to assess this
Spastic Dystonic outdoors and in the
Twisting movements / posture of limbs between your child’s second and third birthday. community.
Hemiplegia
Affects arm and leg on the same side Mixed and trunks
Diplegia Mixed Cerebral Palsy may have specific features Ataxic LEVEL 5
Primarily affects both legs from both Spastic types and Disturbed sense of balance, involuntary
Extrapyrmidal types of Cerebral Palsy movements Self-mobility is
(in some there may be limited arm involvement)
extremely limited
Triplegia Athetoid
Difficulty controlling and coordinating movement, even with the use of
3 Limbs involved
involuntary movements assistive technology.
Quadriplegia
All 4 limbs are involved
8 9
What Causes Cerebral Palsy?
How is Cerebral Palsy Diagnosed?
What advice
would you give to
parents whose What Causes Cerebral Palsy?
child has just
There are many different causes of Cerebral Palsy. Sometimes
been diagnosed?
doctors can pinpoint why a child has Cerebral Palsy, other times it
is very difficult to tell. Cerebral Palsy is caused by injury to the
Ask, ask, ask questions! developing brain. This injury affects the parts of the brain that
control movement: the motor cortex, the cerebellum and the
Don't be afraid of the basal ganglia. This can occur before, during or just after birth.
diagnosis and take
advantage of all One common cause of Cerebral Palsy is prematurity. Infants born
information offered. at less than 32 weeks gestational age are more prone to bleeding
Don't be afraid to ask in the areas of the brain that control motor function. Bleeding
questions of any medical occurs because the blood vessels are not fully developed. If this
people. Remember you happens, premature infants will then develop peri-ventricular Common Causes of Cerebral Palsy
are in control and you leukomalacia (PVL) which affects the brain’s motor area. PVL
will be the best advocate usually leads to a diagnosis of Cerebral Palsy later on. Prenatal (Before Birth) Perinatal (During Birth) Postnatal (After Birth)
for your child. • Congenital Malformations • Placental Abruption • Asphyxia
e.g. Schizencephaly
Another common cause of Cerebral Palsy is stroke. Just like adults,
• Hypoxic-Ischemic • Head Injury
Breath and research... children can also have strokes and are particularly vulnerable • Congenital Infections Encephalopathy
when in utero. No one knows yet how to detect or prevent this, e.g. Rubella, • Brain Infections
look for ways you can
Cytomegalovirus • Cord Prolapse e.g. Meningitis,
assist in your child's although research is ongoing. Children who have Cerebral Palsy
Encephalitis
progression. caused by a cerebral artery stroke should have screening blood • Shoulder Dystocia
• Prematurity /
work done to make sure they don’t have any other risk factors for Low Birth Weight
Every child is different. bleeding and stroke.
• Inflammation of Placenta
Have faith, your child
may surprise everyone! One common misconception is that Cerebral Palsy is caused by a • Twins / Multiple Births
difficult birth. In fact, only a small fraction of Cerebral Palsy is
related to specific birth events and in almost all of these cases, even • Clotting Abnormalities
e.g. Factor V Leiden
the best pre-natal, obstetric and pediatric care could not have
Deficiency
prevented the difficulties or the development of Cerebral Palsy.
10 11
How does Cerebral Palsy Affect my
Child’s Learning and Daily Activities?
The Term Cerebral Palsy Refers Only Learning Disabilities
to Motor Difficulties
There is also a much higher incidence of learning disabilities
The term Cerebral Palsy refers only to motor difficulties. and differences, including attention problems, in children with
This includes large movements, such as walking and running Cerebral Palsy. Sometimes, the injury to the brain affects other
(gross motor skills), and can include movements of the hands areas which control thinking and learning, resulting in an
and arms, such as eating and printing (fine motor skills). intellectual delay or a learning disability.
The muscles used for speech and language can also be Learning can also be affected because the child has difficulty
affected. Speech problems can range from slowed speech, to interacting with the environment due to their movement
difficulty being understood, to not being able to speak at all. If difficulties. For example, they may not be able to experience
the speech and language difficulty is severe, your child may be the thrill of exploring the ‘pots and pans’ cupboard because
able to use an assistive device such as a Picture Exchange they can not get to it and thus lose out on experimenting with
Communication System (PECS) or a specialized computer to some sounds, places and objects. This is just one reason why
help with their communication. it is important to provide stimulating learning experiences and
to bring the environment to them as much as possible.
However, most learning issues relate to underlying changes
and differences in the brain.
The team at
Sometimes consultation with a Psychologist is recommended to
Grandview can
complete a formal evaluation of your child’s skills. The team at
help you Grandview can help you understand your child’s strengths and
understand your challenges and help you plan appropriate goals.
child’s strengths
and challenges and
help you plan
appropriate goals.
12 13
How Healthy are Children
What is the best
who have Cerebral Palsy? thing about having
a child with
Cerebral Palsy?
How Healthy are Children who have Cerebral Palsy?
She is an amazing child;
Most children with Cerebral Palsy are quite healthy. However, there are some she makes me laugh
medical issues that are more common in children with Cerebral Palsy. everyday.
Bones and Muscles Vision and Hearing
I think one of the main
If a child has difficulty weight bearing, their bone density can be decreased and calcium and vitamin D Some children with Cerebral Palsy have differences in the
things is that it put our
supplements may be needed. When a child is not able to walk on their own, tight muscles can pull on their muscles that control eye movements. This is called strabismus
lives into perspective and
joints, particularly the hips. Very tight muscles can cause the hips to slide (sublux) within the socket. Your and can cause one eye to ‘turn in’ or give a ‘cross-eyed’
we don't sweat the small
doctor will monitor your child’s hip joints and spine to determine if x-rays are needed. If there are differences appearance. It is important to treat strabismus as soon as
things. Our daughter is
on the x-ray, or if your child is having pain in their hips, they will be referred to see a Pediatric Orthopedic possible because glasses, patching and/or surgery may be
Surgeon who run clinics at the Centre. Sometimes other muscles become very tight and surgery can help helpful to restore the muscle balance and prevent further vision and always has been
lengthen these muscles. difficulties. A referral to an Ophthalmologist may be required to such a happy girl with a
monitor your child’s progress. A list of Optometrists equipped to smile that melts your
Feeding, Growth and Nutrition see children with Cerebral Palsy is also available at the Centre. heart. We have also
When a child’s motor system and movement is severely affected, the muscles that control feeding and learned not to under
In Ontario, all children have their hearing screened at birth.
swallowing are also affected. Occasionally a child will have a gastrostomy tube (g-tube) inserted to help estimate her abilities.
However, if your child spent a long time in the Neonatal Intensive
with feeding. This is a special tube that goes directly into their stomach and provides either all their nutrition Care Unit (NICU), been on multiple medications, has had a lot I didn't think she could
or a ‘top-up’ of calories to help with growth. Your doctor can help you determine if your child is growing of difficulties with ear infections, or there are concerns about their do certain things only to
adequately and whether they need more calories to keep up with weight gain. Your child may also be more hearing, the Centre’s Audiologist can retest their hearing. be pleasantly surprised.
prone to gastro-esophageal reflux (GERD), constipation, drooling and dental cavities. Usually a
community pediatrician will help you manage these issues. Sleep It teaches me about
All small children can have sleep challenges. However, a child people with special
Seizures
with Cerebral Palsy is particularly prone to having them. It is often needs. I'm more aware
Children with Cerebral Palsy have an increased risk of seizures; however, many kids never have seizures. harder for parents to let their child ‘cry it out’ as there are so that we can overlook the
Epilepsy refers to a pattern of repeated seizures. Children with spastic diplegia have a decreased likelihood many other challenges facing them on any given day. Sometimes negative and think about
of seizures compared to children with hemiplegia. Children with spastic quadriplegia have the highest parents worry their child may hurt themselves by crying. All what people with
incidence. Children with extra-pyramidal Cerebral Palsy may have unusual movements easily confused with children need a good night’s rest and so do their tired parents! disabilities can do.
seizures. Some children will need to take medication to help control their seizures and will be followed by So, if your child is not sleeping through the night by 9 months of
a Neurologist. age, talk to your doctor.
14 15
Can Cerebral Palsy be Treated?
How do we Manage Cerebral Palsy?
Can Cerebral Palsy be Treated?
How do we Manage Cerebral Palsy?
There is no ‘cure’ for Cerebral Palsy. The focus of treatment is on promoting health, wellness and Speech and Language Therapy
participation in the community. Children and families may face challenges because of the disability, Speech-Language Pathologists (SLPs) help children with
but this should not stop them from becoming active members of society. Grandview’s goal is to help communication and feeding. They also teach parents ways to
children achieve their personal best through therapy, prevention of secondary problems and help their child develop language, speech and other
participation in school and community life. communication skills. Sometimes other methods of
communication will be introduced such as signing, pictures or
electronic devices. Alternative and Augmentative
Communication (AAC) is used when communication is very
difficult for a child.
What is the
biggest
Physiotherapy Cerebral Palsy and Botulinum challenge?
Most children with Cerebral Palsy will see a Physiotherapist (PT) to help develop gross motor skills such as Toxin A (Botox®)
rolling, crawling, standing and walking. Physiotherapists use a variety of methods to help with this including
an active ‘hands on’ approach, and home programs consisting of stretches, exercises and participation in What is Botox®?
The biggest challenge is
physical activities. Physiotherapy will be based on specific goals identified by you, your child and their Most children with Cerebral Palsy have stiffness in their muscles and continues to be
therapist. Specialized equipment may be suggested, such as a walker or stander. Your child may also benefit referred to as spasticity. When spasticity is severe, sometimes
advocating for our
from using braces such as ankle-foot orthotics (AFOs). There is an Orthotics Clinic at Grandview where medications can be used to decrease it. Some children may
daughter's needs in all
your child can be fitted with orthotics made especially for them. benefit from injections of Botulinum Toxin A (also known as
areas of her life. Having
Botox®) to help reduce this tightness in their affected muscles.
to have faith and trust in
Occupational Therapy (OT) Botox® temporarily paralyses the spastic muscles so there is less
pressure on the joints. The spastic muscles will then grow better so many people dealing
An Occupational Therapist (OT) will assess your child’s fine motor skills and determine how their fine motor
and the other muscles can be strengthened. The decision to use with your child who is
abilities are impacting their participation in daily activities such as dressing, feeding, bathing, printing and
®
Botox is made very carefully and is based on the amount of unable to verbally
play. Sometimes group therapy will be recommended, other times it will be individual therapy. The OT can
spasticity, the child’s medical history, their skills, and input from communicate has and
also look at your child’s environment and make suggestions about equipment needs like bath chairs, home
parent and child. The Centre has a specialized muscle tone clinic probably always will be
modifications and seating options, such as use of a wheelchair.
where children are seen by a Physiatrist who will help you decide a challenge for me,
if Botox® is right for your child. her mum.
16 17
New Programs
& Alternative Therapies Family Support Workers
What’s New in Research? Here to Help What barriers
exist in society
There are many exciting areas of research in Family Support Workers will help you adjust to the news
and in the
Cerebral Palsy. Virtual reality games may be a that your child has Cerebral Palsy and will provide
way to improve hand function in children with opportunities for you to talk with other parents who have community?
Cerebral Palsy. Some researchers are looking children with special needs. They will provide information How can families
at how the function of an affected hand about specialized community supports, resources and
overcome this?
improves if the stronger arm is temporarily available financial sources. They can also provide access
constrained. There is ongoing research in the to individual and family counseling, educational
dosing and scheduling of Botox® injections workshops and support groups. Families who have just We face many physical
and scientists are also looking at risk factors for learned their child has Cerebral Palsy have a lot of barriers in the community
Cerebral Palsy and ways to prevent injury to questions, not to mention stressors such as multiple and accessibility is still
motor areas of the brain. A lot of research is medical appointments. Our family support team is skilled an issue that needs to be
undertaken at Bloorview Kids Rehab in Toronto at talking with families, acknowledging their experiences, an ongoing fight.
and at Sick Kids. From time to time, Grandview connecting them with other families and helping them Families need to get
becomes involved in research and you may be cope with all the new information. involved and speak to
asked to participate, if interested. Caring for a child with a special need can local government about
be very stressful. There are community these issues.
resources that can help with respite
Do Alternative Therapies Work? care. Family Support Services can
help you find what you need.
Many families use alternative and complementary therapies with their
children. We understand you may want to try anything to improve your
child’s health and abilities. However, it is important to carefully look at the
medical evidence for any alternative therapy. We strongly encourage you to
discuss your questions with us first, as some therapies may interfere with
other treatments, such as seizure medication. There are some
complementary therapies that have been shown to be helpful such as
therapeutic horseback riding and hydrotherapy (therapeutic swim time).
18 19What Other Programs do you Offer?
Educational, Recreational and Leisure Programs
Preschool Programs Recreation and The Door’s Open…
Leisure Programs Now What?
Children with Cerebral Palsy greatly benefit from
a structured preschool environment to enhance The Centre has fabulous recreation, leisure
It can often be an overwhelming and
their development. Durham Region has many and summer day camp programs, which
stressful time when your child is
excellent childcare programs available that are made possible by Grandview Children’s
diagnosed with Cerebral Palsy. As
provide such care. Information about these Foundation. Activities like swimming
your child grows and develops, new
programs can be found at lessons, creative dance, yoga, martial arts,
questions are certain to arise. We
www.region.durham.on.ca/childrensservices. sports night and bowling are also offered.
encourage you to ask your team at
The Centre’s Preschool Outreach Program Some programs are offered at the main
the Centre a lot of questions. We
(POP) provides consultation to the licensed site, and some elsewhere in Durham such
have listed additional resources at
preschools and daycares in Durham. There is as at Legends Sports Centre, Ajax
the back of this booklet - visit our
also a daycare for children with special needs Community Centre, Lakeside Community
Resource Centre for more
available at Resources for Exceptional Children School and Sinclair High School. The
information. In our experience,
and Youth. A subsidy can be applied for through activities are not only fun, but give
despite the initial sadness that many
the Children’s Services Division of The Regional participants a chance to get physical and
Municipality of Durham, although the wait list for
Campbell Children’s School show off their abilities.
parents feel after a diagnosis of
Cerebral Palsy is made, most go on
this subsidy can be long. Your family support
Campbell Children’s School is a small, to find parenting a child with
team can help you explore these options. Programs encourage social interaction with
specialized school located at the Centre. It is Cerebral Palsy a very rewarding
peers and provide the opportunity to
designed for children with physical disabilities experience. The children who come
explore without parents. Programs are
and/or severe speech needs who require active to the Centre are wonderful
changing all the time so keep an eye out for
therapy. All potential students must be able to blossoming individuals who will
the ones that are right for your child. The
participate in the daily school program, group achieve AMAZING things! We
most recent Rec Guide is always available
activities and therapy sessions. Spots are welcome you to the Grandview
at Grandview and on our website at
available for JK, SK and occasionally Grade family and are confident that we will
www.grandviewcc.ca
One. Short term placements after surgery may become a positive part of your
also be available. Spaces are limited, so discuss family’s life.
this option with your child’s therapy team.
20 21Financial Resources Available for
Families of Children with Disabilities
Financial Resources Available for
Families of Children with Disabilities
Jennifer Ashleigh Children’s Charity Special Services at Home (SSAH)
Here are some of the financial resources available to families of children with disabilities. This provides financial assistance for children Helps families purchase respite services or
You will probably need help to navigate ‘the system’, so talk to one of our Family Support Workers, with disabilities such as treatment needs and allows them to pay a worker to help their child
they will be happy to help. medical expenses. develop skills and participate in activities in the
905.852.1799 community.
Assistance for Children with www.jenniferashleighfoundation.ca 905.665.1030 www.cfcs.gov.on.ca
Disability Tax Credit (DTC)
Severe Disabilities (ACSD)
Reduces the amount of tax you have to pay if
Assists with expenses related to your child’s Ontario Federation for Trillium Drug Plan (TDP)
you qualify. A Disability Tax Credit Certificate
disability and is based on income. If you Cerebral Palsy (OFCP) This helps families who spend a large portion
T2201, signed by your doctor, needs to be sent
qualify, your child may receive a drug and This provides some financial support for of their income on prescription drugs.
to the Canada Revenue Agency.
dental card. equipment. OFCP also offers a variety of 416.326.1558 or 1.800.575.5386
1.800.959.8281 www.ccra-adrc.gc.ca
905.665.1030 www.cfcs.gov.on.ca programs including educational services and www.health.gov.on.ca
individualized planning.
Easter Seal Society - Durham Region
Assistive Devices Program (ADP) 416.244.9868 or 1.877.244.9686 Access 2 Entertainment
This helps with some equipment costs such as
www.ofcp.on.ca Depending on your child’s abilities, you may
This covers approximately 75% of the cost of wheelchairs, orthotics and ramps. Easter Seals
certain equipment (i.e. wheelchair, feeding be able to purchase an Access 2 Entertainment
also run summer camps and may provide
pump, ankle-foot-orthotics). Your child’s Respite Services Card, which provides discounts for
financial assistance toward local camp
therapist or dietitian can help you apply. Helps families with in-home and out-of-home entertainment activates, such as movies and
programs. Look on the National Programs
416.327.8804 or 1.800.268.6021 respite needs and can register you for the other attractions. www.access2.ca
page for Access 2 Entertainment Card
www.health.gov.on.ca Community Helpers for Active Participation
information regarding free admission for
(CHAP) Program. CHAP helps families find President’s Choice Children’s Charity
support persons.
Diaper Grant people interested in working with children with This charity is dedicated to helping children
416.421.8146 or 1.866.6303336
Incontinence Supplies Grant disabilities. Special Services at Home (SSAH) who are physically or developmentally
www.easterseals.ca www.easterseals.org
funding can be used to pay a CHAP worker. challenged, including children with Cerebral
Available from Easter Seal Society for children
416.322.6317 www.respiteservices.com Palsy. They are committed to helping remove
over age 3 that use diapers. Your doctor must
sign the application. barriers to independence and may help fund
1.888.377.5437 www.easterseals.org mobility equipment and environmental
modifications.
www.presidentschoice.ca/Childrenscharity
22 23Additional Resources
Additional Resources
Please visit our Resource Centre for more information!
Grandview Children’s Centre Disability Taking Cerebral Palsy to School American Academy for Cerebral Palsy and
Awareness Program Developmental Medicine
Elizabeth Anderson, Valley Park, MO: 2000.
Other resources for school age children and their JayJo Books, L.C. www.aacpdm.org
classmates 905.728.1673 ext 2560.
I’m Wendy Blair, Not a Chair! Need a family doctor?
Children with Cerebral Palsy Try The College of Physicians and Surgeons of
Carolyn MacDiarmid. 2002. Canadian
A Parents’ Guide - Second Edition Ontario’s doctor search. www.cpso.on.ca
Council on Rehabilitation and Work.
Edited by Elaine Geralis.Woodbine House 1998. Wendy doesn’t have Cerebral Palsy, she has a
spinal cord injury, but this is such a great book Ontario Federation for Cerebral Palsy
to send to school for the SK to Grade 3 classes www.ofcp.on.ca
to read.
Ontario Paralympics Sports Association
Grandview Children’s Centre Website www.paralympicsontario.ca/ocpsa.shtml
www.grandviewcc.ca
Parentbooks.com
Cerebral Palsy: What Parents and A bookstore in Toronto that has great resources
Doctors Want to Know for families of children with special needs.
Peter Rosenbaum. British Medical Journal,
Volume 326, pg.970-974, May 3, 2003. A Comprehensive Guide to Intellectual &
Developmental Disabilities
CanChild Centre for Childhood Brown & Percy 2007.
Disability Research Chapter on Cerebral Palsy written by
www.canchild.ca Drs. Hunt & Fehlings.
24 25Glossary
Alternative Therapy Constipation Gastro-Esophageal Reflux Disease (GERD) Picture Exchange Communication
Therapy that is outside the scope of traditional A child is not having regular, soft bowel Liquid and/or food that is in the stomach and System (PECS)
medical practice. movements. Frequency of normal bowel moves back up to into the esophagus. Many A series of cards, which can be used in place of
movements can vary from child to child but young children experience this, but when a spoken language, to request items and activities.
Ankle-Foot-Orthotic (AFO)
most typically developing children will have child has Cerebral Palsy and their muscles Physiotherapist (PT)
A plastic brace that is molded to the shape of
at least one bowel movement per day. don’t function normally, the reflux can be A professional trained to help achieve
your child’s foot. It helps maintain a stretch on
severe. Some symptoms include pain, maximum mobility.
tight muscles and a normal foot position. Developmental Pediatrician
irritability and vomiting.
A Pediatrician who has completed specialized Prematurity
Ataxia
training in child development. They will collect Gross Motor Function Classification Infants who are born before 37 weeks gestational
A disorder of movement that results in
detailed information and do a physical System (GMFCS) age.
instability while walking.
examination to make a diagnosis. Sometimes Describes the severity of Cerebral Palsy.
Audiologist they will complete additional tests to assess Psychologist
Gross Motor Skills A professional trained in assessing thinking
A professional who assesses hearing. specific aspects of development.
Large movements such as rolling, sitting, or cognitive skills.
Basal Ganglia Diplegia crawling, standing and walking.
Specialized structures in the brain that help When primarily the legs are affected. Quadriplegia
Gastrostomy Tube (G-Tube) When both arms and both legs are affected.
control movement.
Dystonia A tube inserted by a surgeon or radiologist into
Botulinum Toxin A (Botox®) Muscles that have variability in tone. Children the stomach by making a small incision in the Seizure
Medication used to treat muscle tightness. It is usually have some uncontrolled movements. skin and stomach lining. It is used for children An electrical discharge in the brain that causes the
derived from a toxin produced by a bacteria that who are unable to manage pureed food or nerve cells to fire too quickly resulting in a loss of
Epilepsy consciousness and shaking of the arms and legs.
causes temporary muscle weakness. who are having trouble taking in enough
A condition where an individual has seizures Sometimes seizures are subtle and will result in
calories to maintain their weight.
Cerebellum regularly. loss of control of only certain muscles, staring
A structure at the back of the brain that is often Hemiplegia spells or changes in heart rate.
Extra-Pyramidal Cerebral Palsy
considered to be the “control centre” When one side of the body is affected.
Cerebral Palsy that is predominately a Spasticity
for movement.
movement disorder as opposed to spasticity. Magnetic Resonance Imaging (MRI) ‘Tightness’ in the muscles.
Cerebral Artery Stroke A large magnetic tube machine. The child goes
Family Support Worker Speech-Language Pathologist (SLP)
A blockage or bleed of one of the main blood inside the tube and the magnetic forces in their
A social work professional with a broad range A professional trained to assist in verbal or
vessels of the brain. brain are measured and turned into a picture.
of skills who can help you and your family cope non-verbal (pictures, computers, signs) speech
Commando Crawl with the challenges of having a child with a Motor Cortex production and language skills.
When a child moves on their stomach by disability and provide links to financial and The area in the brain that controls basic motor
pulling along with their arms, without much community programs. function. Strabismus
movement in the legs. (i.e. an army A visual disorder where the eyes are misaligned
Fine Motor Skills Occupational Therapist (OT) and point in different directions.
commando crawling under a wire.)
Movements of the hand and arm, such as A professional trained to help achieve maximum
Complementary Therapy eating, dressing and printing. functional independence and often focuses on Sublux
Used in conjunction with traditional medical hand function and equipment needs. Gradual movement of the head of the femur bone
therapy. It may include such things as (top of the leg) within the hip socket. When a child has
Periventricular Leukomalacia (PVL) very tight muscles and is not weight bearing, this
therapeutic horseback riding or sensory
Injury to the white matter surrounding the movement can change the forces at work on the hip,
integration therapy.
ventricles (spaces) in the brain. causing the hip to gradually move out.
26 27600 Townline Road South, Oshawa, Ontario L1H 7K6
Tel: 905.728.1673 or 1.800.304.6180
Fax: 905.728.2961
Email: info@grtc.ca
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